"Science" often has it's head up its ass, as many issues have shown over the years
Far, far too often, it has had to be bludgeoned into numbskulls that their cherished beliefs are wrong, usually after many good folks' careers have been blighted by daring to speak out.
The Scientific Method is good, slow, but good.
Problem is that it's all really about people, and there's the rub.
The more money and power are involved, the more corrupt, stupid and dogmatic it gets in any Human sphere, including science.
etc etc...

We also have to understand that this stuff is extremely complex. The insufferable arrogance that exists over a mere few decades of knowledge and tools to comprehend these problems is absurd!
Want to know something REALLY scary? Every single fact we know about anything, maybe wrong. If you can't deal with that fact, you ain't in the Kansas Science Faire no more, Toto!

Science is about probability, if you want absolute dogmatic truth, theology is at the end of the hall!
If you want to make enemies, try to change something

I wasn't sure where to post this, this seems as likely a place as any. This goes to the question of whether or not Lo and Alter's finding of PMLVs supports XMRV, and how that relates to a recombination origin of XMRV and its association with ME/CFS. If it is sufficiently similar to be support for Lombardi et. al., as Lo and Alter assert, then the contamination claim of an XMRV recombination event in the early 90s is irrelevant because the virus clearly predates that.

If on the other hand, PMLV is taken as very different, then the contamination claim is irrelevant because they also have to prove PMLVs are not associated or causal for ME/CFS, which they have not attempted to do.

Either way a claim that XMRV originated as a recombination event in the creation of a prostate cancer cell line in the early 90s is irrelevant in the big picture - it is just a technicality at best, misleading at worst.

This is a very recent comment made by Alter when he was asked about the 2 recent Science studies:

The Health Blog asked too. Through an NIH spokesperson, Alter replies that the PNAS paper did not link XMRV to chronic fatigue syndrome but rather the larger family of polytropic murine leukemia viruses to which XMRV belongs. The paper never reported finding XMRV itself. Thus the finding that XMRV may be a contaminant traced to cancer cells in mice does not pertain to the finding published in PNAS, Alter says.

That is a long list of differences, for sure - much longer than I would have expected. Good for the WPI for laying out exactly where they feel the problems are. I am going to try and get a response from somebody in the field.

However, starting off by telling people they are not thinking things through (and carrying on in similar style) is likely to produce an uncomfortable experience for you.

I think, other than unsympathetic physicians, you do not understand our situation. This is understandable. The truth is the stuff of novels, movies, science fiction. Although I think most publishers would turn it down as too outlandish to publish!

Let me illustrate with an analogy:

Lets say that US doctors didnt know much about Tuberculosis, and it was a fairly new disease to the medical world (some years ago). There were some outbreaks in the US and around Europe, and some doctors in England studied, characterized, and named it, wrote textbooks, and the WHO made a listing under pulmonary disease.

The US had some outbreaks, and one at Lake Tahoe got some special attention. Doctors there (who couldn't diagnose it but knew it was contagious) called in the CDC. The media noticed this was a popular resort area and began calling the disease the Yuppie Flu. They ignored the fact that the disease wasnt limited to rich tourists but also waitresses and other people of all income classes. The CDC came with a junior member who looked at a few patients, wasnt too interested, and went back to Atlanta.

The CDC had to name the disease, however, and write a case definition. This they did rather carelessly, and christened the disease, Chronic Breathlessness Syndrome (CBS). They ignored pleas to use the established name of the disease, Tuberculosis, and they classified the disease as idiopathic, since they had not identified an infectious agent or settled on a disease process.

Since the case definition was not exact, it included persons with bronchitis (which was also not a well-known disease) and panic attack, both of which included the symptom of breathlessness.

The British government liked this development and British psychiatrists wrote a new case definition, with the new name, based entirely on the symptom of breathlessness (the only required feature of the definition was chronic debilitating breathlessness). Many of their patients with this definition had panic attack. They told all their TB and bronchitis patients they had CBS, and referred them to psychiatry clinics, and began treating them with a protocol designed for panic attack in hypochondriacs.

The US government noticed that this treatment was relatively cheap, and began to use that as well.

Unfortunately, one of the components of the treatment made TB patients very much worse. All the studies failed to record reasons for study dropouts. They made up various theories about why TB patients did not adhere to the protocol, always saying there was something wrong with how the TB patients interpreted reality or focused on "normal bodily processes" and mistook these for symptoms of a serious disease, or had phobias, or just wanted to stay on pension, or similar.

Society in general and doctors in particular had always been suspicious of TB because a causative agent had not been identified, because current medical testing procedures did not identify the disease process, and because (for the physicians) the CDC had classed it as an idiopathic illness. Since it is now being treated as panic attack and a hypochondriosis, and since many bronchitis patients eventually improve, they feel they are justified in the belief that TB is not a serious or real condition.

Health authorities specifically told doctors not to carry out any tests for TB except to rule out asthma and other known diseases, and not to use any treatments specific for TB, even though there were some tests and treatments shown by research to help some or most TB patients. There were even biomarkers suggested for TB. Because these did not work for bronchitis and panic attack, health authorities specifically said not to use them except in research.

TB represents ME/CFS
bronchitis represents CF (chronic fatigue which does not meet the criteria for CFS and could be from any number of causes, including self-limiting post-viral disease)
panic attack represents primary anxiety and depressive conditions

Back to this universe

There is a school of thought which methodologically mischaracterizes an infectious neruo-immune disease (ME/CFS), which the WHO has classified as neurological, as if it were a form of of hypochondriosis. This school of thought is the only one our governments listen to--or was, until XMRV got their attention and now we have two or three scientists interested, XMRV or no XMRV. As Alex said, they (not counting the exceptional interested scientists) exclude all inconvenient evidence pointing to biomedical pathologies of the disease.

ME/CFS research is allocated between $4-6 million per annum. To compare, multiple sclerosis (another women-predominated disease which has only recently escaped being diagnosed as "hysterical paralysis" to be properly classified as a neurological disease) gets $144 million. Asthma and Alzheimer's, which do not discriminate by gender, get $300 million and $500 million, respectively. All are serious diseases, and can be debilitating. The one with the least research has no approved treatments and no approved biomarkers (biomarkers are available, just not approved).

That is a long list of differences, for sure - much longer than I would have expected. Good for the WPI for laying out exactly where they feel the problems are. I am going to try and get a response from somebody in the field.

Click to expand...

Good idea. Be interesting if the Levy study
was now added to this comparison chart.

Please keep discussion on the issues rather than making things personal. If it is demonstrated this cannot be done this thread will be permanently closed.

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Clarification: this message was made in response to posts that have now been removed from public visibility for the purpose of keeping this thread on track. It is not directed at any of the recent replies seen here. My apologies for the confusion.

montoya and peterson are both doing some high-tech pathogen-finding. wonder what will come of it.

Click to expand...

Wonder no more! Simply go back to Sept 2009 and look at the progression of XMRV.

Or if you are really brave - go back 20 years plus, to 1988 and consider the 3,000 plus pieces of existing research in CFS.

That should give you some clues on what is likely to come of it.

Sorry, not a happy post. With recent developments, Coffin, Levy, Science requests for voluntary retraction, CDC/NIH not allocating any real funds towards CFS (and in light of these developments that they probably knew were coming - that was all the justification they needed) I am not feeling very hopeful.

Research and science - at this juncture - have and continue to fail us

One day, whatever the causative effect is of ME/CFS, there will either be an horrific epidemic (if infectious), or local catastrophy (if complex triggering of some undelrying issue and then another factor is introduced, be it contaminated vaccine, chemical or whatever the hell)

Since the "collective finger has ben shoved up the collective bunghole" about this illness and work upon it, when this inevitable outbreak (or worse) occurs, say another hospital or town outbreak, hundreds or thousands of follk will suffer and die, needlessly, because of a bunch of assholes and collective arrogance and stupidity have deliberately blocked work on this issue and will be directly repsonsible for such, and it is an atrocity.

And since many folk now won't come forward with this kind of illness for fear of ridicule, or are denied proper hearing by bigotted clinicians...well, you have the recipes for a "Titanic" class disaster, oh, make that "Tuskegee" or maybe "SARS".

After seeing the gross bungling, at best, of the PACE trial, there is ample reason to have gross distrust of any negative studies on any ME/CFS related issue. Science (the field of Human endeavour not the magazine) itself has been compromised on this entire issue.
The discrepancies between not finding any XMRV not even in controls, throws many studies into doubt, OR the ones who claim contamination have a hard time explaining the huge differences between controls and ME/CFS patients OR epxlaining how some labs do or do not have these issues.

And this, today on the BBC is a cracker:

Dr Jonathan Stoye, virologist at the Medical Research Council National Institute of Medical Research, said: "It comes as no great surprise, in fact it was inevitable since a series of studies failed to reproduce the original results."

"It should be made as definitive as possible that XMRV is not linked to chronic fatigue syndrome. It is a myth."

Click to expand...

oh great, so he's a prophet is he, now, that he can be 100% sure about such? wowzers, hip hip hurray, Jesus and absolute certainty have returned!
In that case hey lets all go donate blood as we know we cannot be infectious...any takers for our blood, hm?

Wonder no more! Simply go back to Sept 2009 and look at the progression of XMRV.

Or if you are really brave - go back 20 years plus, to 1988 and consider the 3,000 plus pieces of existing research in CFS.

That should give you some clues on what is likely to come of it.

Sorry, not a happy post. With recent developments, Coffin, Levy, Science requests for voluntary retraction, CDC/NIH not allocating any real funds towards CFS (and in light of these developments that they probably knew were coming - that was all the justification they needed) I am not feeling very hopeful.

Research and science - at this juncture - have and continue to fail us

Click to expand...

I think we must gradually change the situation so that it will more be OUR science that gets done. The WPI is "ours" too, in a way, because it was founded by a familiy affected with ME/CFS, but that's an exception.
It's others than us that have the initiative and they have their own views and motives that are not necessarily the same as ours.
It's our lives and our future and so we should try to get more influence, more control. This requires we organize more and better. The community of patients must become a stronger player in this story. So far we have mostly been observers, that can only react to what others do. But they do what they want to do, wheter we like it or not. Everybody has his own interests, we must make sure it's ours that determine more where things go.
We must flood into the organisations. What percentage of people with ME/CFS are members of an organisation now? 5%? Imagine what power we would have if that was 80%.

Wonder no more! Simply go back to Sept 2009 and look at the progression of XMRV.

Or if you are really brave - go back 20 years plus, to 1988 and consider the 3,000 plus pieces of existing research in CFS.

That should give you some clues on what is likely to come of it.

Sorry, not a happy post. With recent developments, Coffin, Levy, Science requests for voluntary retraction, CDC/NIH not allocating any real funds towards CFS (and in light of these developments that they probably knew were coming - that was all the justification they needed) I am not feeling very hopeful.

Research and science - at this juncture - have and continue to fail us

Click to expand...

I have the same impression. I dont know maybe someone will say that its crazy to wish to have a retrovirus but I think only if we will know the cause of our sickness we have a chance for a treatement. Thats why I hoped that they will confirm xmrv. now, with this amount of research money, we will wait another 20 years for a possible cause. We already know that something really nesty is in our body - and in my unscientic opinion its doesnt matter if its xmrv or something else - we just need to know the cause to move.

New American research shows that there could be a link between the controversial MMR triple vaccine and autism and bowel disease in children.

The study appears to confirm the findings of British doctor Andrew Wakefield, who caused a storm in 1998 by suggesting a possible link.

Now a team from the Wake Forest University School of Medicine in North Carolina are examining 275 children with regressive autism and bowel disease - and of the 82 tested so far, 70 prove positive for the measles virus.

Last night the team's leader, Dr Stephen Walker, said: 'Of the handful of results we have in so far, all are vaccine strain and none are wild measles.

'This research proves that in the gastrointestinal tract of a number of children who have been diagnosed with regressive autism, there is evidence of measles virus.

'What it means is that the study done earlier by Dr Wakefield and published in 1998 is correct. That study didnt draw any conclusions about specifically what it means to find measles virus in the gut, but the implication is it may be coming from the MMR vaccine. If thats the case, and this live virus is residing in the gastrointestinal tract of some children, and then they have GI inflammation and other problems, it may be related to the MMR.'

The 1998 study by Dr Wakefield, then a reader in gastroenterology at the Royal Free Hospital in North London, and 12 other doctors claimed to have found a new bowel disease, autism enterocolitis.

At the time, Dr Wakefield said that although they had not proved a link between MMR (measles, mumps, rubella) and autism, there was cause for concern and the Government should offer the option single vaccines - instead of only MMRs - until more research had been done.

The paper - and the confused interpretation of its findings - caused uproar and led to many parents withdrawing their co-operation for the triple jab. Ten of the paper's authors also signed retractions on the interpretation but stood by the science.

This is the second independent study to back up Dr Wakefield. In 2001 John O'Leary, Professor of Pathology at St James's Hospital and Trinity College, Dublin, replicated his findings.

Last night Dr Wakefield said: 'This new study confirms what we found in British children and again with Professor O'Leary. The only exposure these children have had to measles is through the MMR vaccine.

'They were developing normally until they regressed. They now suffer autism and bowel disease.

'The Department of Health and some of the media wanted to dismiss our research as insignificant. The excuse was that no one else had the same findings as us. What they didn't say is that no one else had looked.'

A spokesman for the Department of Health said they had not read the American report, but added: 'MMR remains the best form of protection against measles, mumps and rubella.'

I like Redruth's posts as they show why so few CFS family members who could help, do help. Denial and a wilful ignorance.

My experience has been that families with scientists and medics turn their backs on patients. They refuse to read the histories, engage or even understand the processes. Why do they do this?

I remember when I tried to explain to a researcher once how the UK MRC kept refusing grants for biomedical research. He kept saying "but it can't be like that" over and over again. I came up with quotes from Dr Vance Spence and Dr Kerr and it was still like - "well you must have made them up or these doctors must be mistaken".

A professional bias and professional denial.

(well, it simply cannot be as you describe...., no I have no evidence...., I'm not going to look at it ...... etc etc).

This is exactly what the situation is like. We need family members who are scientists, doctors and researchers to be able to look at the situation and analyse it rationally. Not the defencive knee-jerk reaction. Any ignorant family members must be made to read "and the band played on" and understand HIV/AIDS research.

Redruth will find all of her arguments already thought of and covered on other threads. We patients want the truth and we are willing to look at the worst side of the argument. We will research, argue the points to get to the truth because we want to be better/well.

No wonder so many patients feel suspicious about the professions that should be helping us. After all many ME patients have high IQ's, are as well or better educated than doctors, researchers, biologists and scientists and can still read the evidence. It's not hard. It's just hard work for minds that we not what they were. If I read a medical paper I may need to ask for help. I find it from the hordes of ME patients who were educated and specialised in that topic. I also find help from friends and acquaintances who are interested. I email researchers on both sides of the debate. We didn't lose our brains, curiosity or degrees when we became ill.

For some of us, retrovirology is simply not that hard. There are disagreements of course, lack of science, big holes to think around. That doesn't make it impossible. We still have training and minds.

Yet, we are portrayed as consistently wrong by people (like RedRuth) who haven't even read the history, have no idea what has happened and probably won't stick around to find out that they are wrong.

If it was my sister that was sick with CFS, and there was a possibility it was being caused by a retrovirus then I would be bothered to spend the time to examine the arguments.

I think your observations are sadly true. I think facts that compel a paradigm shift are often rejected most strongly .....and finding out that the world isn't really flat can be extremely confronting. You can only hope and pray that such people have greater compassion for the reports of suffering associated with the illness sufficient to investigate further......than they have in an investment of being right.